July 5th - early morning flight- are we ready?  physically?  emotionally?

The anticipation, the fears, the sadness.  All of these things disappeared as we wheeled all of our luggage towards the baggage claim area in Buffalo and there, waiting outside of the elevator doors as they slowly slid open were two beautiful smiling faces, with arms outstretched for a warm and welcoming embrace.  They had the recognizable HH insignia on their clothing and we never thought we would be so happy to see someone as we were these guardian angels who guided us to our lovely chariot where more gorgeous faces were waiting for us inside.

The last 10 minutes of the drive to Beaver Hollow Resort was so beautiful, we crept along a winding road that meandered through a sweet little town called Java, with the cutest little houses, a quaint little church, markets, antique shops and everywhere you turned the color was a vibrant green - the leaves, the trees and the lush green grass, every now and then the green color looked even more vivid against the brilliant colors of an American flag dancing in rhythm to the wind.  My heart was excitedly beating with the anticipation of what was ahead and the beautiful faces we were about to see. Anxious, scared, excited, happy, sad, all of these emotions consumed me.  I looked at our sleeping beauty, Chloe, took a deep breath, relaxed my face and my body and allowed myself to take it all in.  Love.  It's all about love.

We pulled up to the entrance to Beaver Hollow and there again were more smiling faces of HH volunteers and other families, ready to lend a hand, to comfort with a hug, to kiss our children, to help us carry our luggage or our precious little ones and to guide us to our awaiting rooms which we would be calling home for the next few days.  The rooms, the grounds, the gardens and the scenery were all spectacular - a tranquil paradise - the perfect setting for sharing and for loving.  In the back-drop, nestled in behind the buildings you could see a cute little lake (or was it a pond?) with white & gray ducks, big wooden swing chairs every few feet and meandering trails hugged tightly together with flowers of all sizes and colors.  This is going to be great.  Already, I'm glad that we made the journey.

Now I have to tell you about the best part of our welcome to the symposium, the one thing that cleared away any doubts of whether we should have come, the faces of the most beautiful children you will ever see in your lifetime.  The faces that with one blink of an eye, one curl of a lip, one lift of a delicate finger, one beautiful sigh, one lovely bubble forming at the side of their sweet lips, one little cough to clear their throat, one quiver of their little chin or one slight turn of their head to say 'hello', can reflect a life fully lived and fully loved.  These sweet gentle souls radiate such warmth, such life and such strength.  One look at these gorgeous faces and we knew we were HOME.  We are so blessed to have been touched by these beautiful souls.  

Faces of beauty were everywhere you turned.  Please forgive me, as I am mentioning the beautiful Krabbe children below, if I may miss a few of them.  I am sure that we saw their darling faces and experienced their beauty but it is unfortunate due to time constraints that we were not able to find out their names and to share and meet them and their families more intimately. We are sorry for that but please know that if we missed you this visit we so look forward to meeting you next year.  We send our love to you all.

Aubrey - this beautiful darling girl had to have been the best-dressed girl at the symposium, with those designer outfits & matching handbags made lovingly by her mommy.  Aubrey has the most beautiful crystal blue eyes that sparkle every time you were lucky enough to have her glance your way.  And she has the most peaceful aura about her, you felt relaxed and peaceful in her presence.  A lovely, beautiful girl.

Brittany - whose eyelashes curled so long and so beautifully you thought they wouldn't stop
and she has the best and the cutest big sister you could ever imagine, Taylor.  Taylor always had the most beautiful smile ready for you, all you had to do was look at her beautiful face and the smile was ready for you.  Such happy beautiful girls, such beautiful sisters.

Makayla - have you ever seen such beautiful silky long hair?  Makayla has cuddle-ability.  She had to have been the most hugged and most cuddled baby at the symposium, everywhere you looked she was being lovingly rocked by another mom or dad.  If only we had more time in NY to cuddle & love this precious little girl.

Dalton - sooo cute, he is everything we imagined and so much more.  Dalton is our hero, he is our hope and he is our courage for going places we've never been before.  Dalton is our reason for reaching further and fighting harder.

Gina - energy, energy, energy.  This girl has SPUNK!!  Gina is everything you would imagine a 2-year old to be, she's non-stop and soooooo much fun and I have been waiting so long to see in person this precious little girl with the darling blond pony-tail on the top of her darling face.

Victoria - another blond beauty with lovely pigtails, one on either side of her most delicate face - such a pretty pretty girl.  She was always cuddled in close to either her daddy or mommy and every now and again you'd find her snuggled lovingly by another mom who just had to hold this most precious little girl.

Jeremy - you wouldn't believe that this darling little boy is doing all that he is doing after going through what he has been through:  he is smiling, he is walking, he is doing everything that we never dreamed possible for a child born with Krabbes.  Jeremy, you sure are a cutie!!

Laura - what a doll!!  Laura is such a sweet darling little girl, she is absolutely gorgeous.  She has the most delicate little features, sparkling blue eyes, and beautiful smile.  A little princess.

Sandrine - oh those curly locks and the will to walk.  She is so determined, so precious, and absolutely beautiful.  I'm sure we'll be hearing any day now that Sandrine is running around here, there and everywhere.  She truly is a miracle.

Julia - her naturally curly hair reminds me so much of the little girl from "Charlie Brown & the Peanuts Gang" who had the naturally curly hair.  Julia is gorgeous and she amazes me with her strength and her determination, which I am sure she got so much of from her amazing mom.

Noah - this little boy is crawling, he's really crawling, and so happy, he had such a BIG GRIN for Jim Kelly that he had everyone around him laughing.  Noah has an undiagnosed leukodystrophy but this amazing little boy is a miracle, he is doing things today that were thought medically impossible based on doctors' prognosis years ago.

Mikey - the sweetest little blond-haired boy who stole our hearts he was so adorable.  I remember his sweet little face at all of the seminars as he was held lovingly in his daddy's arms.

Jamie - he is so handsome and always surrounded by his family, you can sense the love of this special family just by being near them.  Jamie you are looking so good and I am so glad I got the chance to be part of the miracle of you.

Matthew - this gorgeous teenager is always ready with a smile and a flirt and I'm so glad I got the chance to talk to him and tell him how handsome he was.  Matthew you are a gem - keep on smiling that beautiful smile!!!!!

And then there's our darling baby,  Chloe , the "basket girl" as she lovingly became.  All of the visiting tired our precious little one out as she slept a big part of the symposium.  But it never stopped people from coming to gently give her a kiss or hold her darling little hands.

Hunter - I am tongue-tied with emotion when it comes to this darling boy who has stolen all of our hearts.  We are so blessed to have this beautiful boy in our hearts and our lives.  Thank you sweet boy for giving us HOPE.

And I certainly can't mention Hunter without mentioning his remarkable, humble and loving parents, Jill & Jim Kelly, who brought us all together in the first place to share in the love of our children.  Thank you for showing us all that LOVE is meant to be.

And how can I forget all of the beautiful angels who were so close to us all weekend,
sending us kisses every now and again and filling the spaces between us with more LOVE and bringing us closer together.  They were everywhere in their beauty and their warmth, their presence was felt in the air that we breathed and the love that we shared.  So many beautiful ANGELS.  Thank you so much for watching over us, for holding our hands, whispering in our ears and wiping our tears.  Thank you so much, please feel our many kisses heavenwards to your darling cheeks.  We miss you all dearly but we thank you for sharing your beauty with us and for showing us what LOVE is really about.

And all of the wonderful sisters, brothers, mommies, daddies, grammies, grampas, relatives and friends, and everyone who came to share their love and their experiences.  Together anything is possible - we have proven that, we really have.

I want to specially mention all of the beautiful children - especially the siblings who have known what it is like to have a brother or sister who has struggled with Krabbe's.  You are all so brave and you are so loved by us all. You are teaching us all about what is most important.  Through you I can see a future so bright and so full of love.  Thank you for reminding us of life's beauty.

And the tears.  So many tears...tears of happiness...tears of love...tears of sorrow...and tears of hope.  Each tear held a moment so precious that no matter how many tears were shed there were always more beautiful moments than there were tears.

Sometimes it was all too much, I have never felt so many emotions all at one time.  But I wouldn't trade one precious moment of our experience for anything.  These moments shared are the most intimate and most precious moments I've shared and no matter how tender or how heartbreaking they were, they will be held in all their beauty within my heart, forever.

So much was learned and shared at the symposium that I couldn't possibly put to words all of the amazing things we saw & felt.  But I just wanted to put in a few loving words about a few moments that touched my heart very deeply.  David, I hope you know what a special man you are.  When you shared a bit of your love for your beautiful Ashley, through the "New Hope" brochure, my tears began and they wouldn't stop for the rest of the symposium.  You have one lucky little baby on the way, he sure has one very special and loving daddy waiting for him.

Gregory, I still laugh when you said that the video you created was "no big deal", do you have any idea the gift you have?  Please keep doing what you are doing and loving as you are loving.  Haley will be in our hearts forever because of your love.

And two beautiful ladies, Micki and Anne, what can I say but "thank you".  Thank you for inspiring us to keep fighting for our children.  If we follow your lead, together we can make newborn screening a reality.  Thank you for your strength and determination.  I know that it comes from your love for your darlings, LeA and Nick, so thank you beautiful LeA and Nick.

And thank you Grace & Anthony for reminding me that the "Basement Buddies" really are great guys and should be let out of the basement a little more often to share and to enjoy life (how about 2 times a week honey?).

Then we were fortunate to have shared a moment with Augusto Odone (Lorenzo's father), who continues to be an inspiration.  He has never given up in the fight for a cure for his son, what a remarkable man.  He is so gentle and so humble and he told us to always keep the doctors on their toes.  We will do that Augusto, we most certainly will.

And I have to mention the gentle courage of those families who attended who have lost their darling babies.  It was not until I saw your beautiful heartbroken faces that I truly felt what it must be like for you.  I am so very sorry.  It must have taken so much strength and courage for you to attend the symposium and you have my utmost admiration and love.  Thank you for sharing your children with us and for bringing a bit of Heaven to us all.  The beauty and the love you have shared with me will be with me always.  I could feel your beautiful babies right there with us as we spoke and your love has filled my heart.  Thank you.

Loving kisses to the beautiful Heavens, where our beautiful angels are dancing & laughing.

Love, happiness, contentment, strength, courage, inspiration, admiration.  LOVE. LOVE. LOVE.

Our hearts are full.
Thank goodness we went.
These friendships will last a lifetime.
Beautiful children, beautiful families.
How blessed we are.

We are forever changed by this experience and we can't wait to do it all again next year.  In the meantime, to all of the families we were blessed to have met and to those we have heard so much about that weren't able to attend thank you for being and sharing all that you are with us.  We love you all dearly.  Because of you and your children we will always have FRIENDSHIP, HOPE & LOVE.

Love & kisses to all,

Lisa, Frank and one tired little Hunny Bear, Chloe
xxxoooxxxooo

See you all next year!!!!!!!

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